Not as easy as it looks

I love TV.

No, seriously, man. I love TV. I get this from my dad. One of the best cards I ever gave my dad had a picture of a man's feet and a child's feet propped up on an ottoman. The front read "You. Me. TV." and the inside said something like "we always had each other." or something cheesy. Sounds dumb and maybe even insulting, but my dad loved it. Probably because we certainly had more than TV in common, but we also had that. We watched cartoons together, then later a lot of the same shows. The year that I was at home with Robbie, my dad would come over on Fridays and we'd watch "our shows," have lunch and just hang out. Occasionally one of us will discover some great new show and call the other and insist we have to watch. Then we'll compare notes. One of us will miss an episode and have to go to the other's house to watch it on their DVR.

We love TV.

Of course, now having a small child, I have far less time for TV than I used to. Now I have a few hours between Robbie's bedtime and my own. And even then, the TV is often more background noise while I do chores than something I can sit and devote full attention to. So I often have backlogs of "less important" shows (or shows that do require full attention, waiting for a time when I can manage that) piling up until the summer or the month after sweeps when the television Gods take away my shows to remind me just how much I love them.

I tell you all this to explain why I had 35 hours of unwatched episodes of Oprah on my bedroom DVR. (Yes, I do have two DVRs. Each has 2 tuners. I told you. I LOVE TV.) (Don't give me lectures about why Oprah sucks. I know she's the enemy of the infertile. Believe me, I've spent more than my fair share of time yelling at her nonsense. But her story is nothing short of amazing, and frankly, she's pretty much the only talk show host with topics that regularly interest me. So I overlook her annoying tendency to repeat anything she says that she thinks sounds smart and just listen to her guests.)

As you may have gathered by the sweltering heat and 100% humidity outside, it's now summer. So there is little new programming on these days.The last week I've been working my way through all of these episodes of Oprah. One of the episodes was "Surviving the unthinkable." Most of this hour was devoted to the story of 4 brothers who had been adopted by some piece of shit lunatic who then starved them almost to death.

The story is horrifying. I honestly don't know that I have the words to explain how awful their story was. The oldest boy was 19 and he weighed 45 pounds. I honestly don't know how he was alive. I cried through a good portion of that show. Three of the four boys are on the show. They have been adopted by what seems to be a lovely family and it was nice to see them smile.

After the show was over, I was reflecting on the woman (I refuse to call her their mother.) who starved them. I mean, there are obvious questions. "Why?" being the biggest one. Why adopt them at all? Why abuse them? Why starve them? Why not just let them go. They truly would have been better off on the streets than locked in her home. They only survived because the oldest was able to sneak out and dig food from the trash and bring it back to the younger boys. Why was she able to get away with it? Why was she only sentenced for four years for such crimes? There were a lot of questions, but not a lot of answers.

I found myself thinking of the great irony, that she would take such pains to keep these boys from eating, when a few states away, I am begging mine to eat. What I wouldn't give to have been able to feed those boys and mine, too.

Friday was not a good day here. Now, Robbie's eating has been improving. By normal standards, it still sucks. But by ours, it's great. He will take tiny bites of a hot dog or chicken nugget. You have to cut them very small and hand them to him one at a time. He carefully chews and swallows, signs for "more" and then you may give him another bite. You can't give him two or he gets upset or drops both on the floor. One at a time, please. No problem. He's still loving his cheez-its. He hit a new record tonight consuming 9 of them in about 40 minutes. That's impressive in our world.

But there are still bad days. Robbie had feeding therapy on Thursday. At the end of the session, he threw a piece of food. That's not something he does a lot of, but it does happen. Usually when he's done, he just hands you back whatever he doesn't want. But if he gets upset, he might pitch something. I wasn't present for the session (it was at daycare) so I'm assuming that she probably didn't understand his cues of being done and pitched a piece of food. She made him get up and using her hand over his, made him pick it up. By both her account and daycare's, that went very, very badly. He was hysterical. And then he didn't eat for 2 days. He wouldn't eat his afternoon snack and only picked at his dinner on Thursday night, then refused everything except goldfish crackers at daycare on Friday.

By Friday night, he was very hungry. You could definitely tell. He was extremely cranky. I'd worked a day shift (a coworker traded me shifts 4 of 5 days last week) so I was making dinner and David was mowing the lawn when Robbie lost it. He wanted to go outside and when I wouldn't take him, he melted down. Now, he's 2, so tantrums are not an uncommon event at all. For the most part, you ignore them and he's over it in about 30 seconds. But this was clearly different. It wasn't just that he was angry. He was inconsolable. I couldn't get him calmed down at all. I gave him a cracker hoping he'd realize that he could eat something and he'd feel better, but he was too upset to even try. I tried to hold him but he was flailing and then I realized his diaper needed changing, so I took him to his room to be changed. At this point I was starting to get overwhelmed, too. It hit me that all of this is because he just wouldn't eat. And if he would eat, he would feel better and I would feel better and we wouldn't have all this sorry and fussing and bad therapy sessions and trying to get daycare to know when to push and when not to and trouble finding a new daycare and all of it. IF HE WOULD JUST EAT.

And then I was angry, too. Angry with Robbie. I even said "WHY WON'T YOU JUST EAT?" as I was changing his diaper. He just continued crying. When he was cleaned up, I put him to his feet and told him to go play. He cried and looked at me like he didn't understand. He was crying and I wasn't fixing it. I washed up and calmly fixed a cup of milk. Maybe if I could get him to drink something, it would sate his hunger enough to get him to stop crying.

I sat down and pulled him into my lap and offered him a sip. He paused enough to take the drink (surprising me) but when he got a taste of it in his mouth, he was hysterical again. I don't know if he thought it was going to be water or what, exactly, but he definitely didn't want the milk.

At this point I was resolved to just sit. If he wanted my lap, he could have it, but I had nothing else to give. The solution was to eat or drink and he wouldn't do it. I thought about tubing him but something inside me said no. No. The solution to fix how poorly he was feeling was not to cry until Mommy tubed him. The solution when your stomach is empty is to EAT SOMETHING. I was still angry.

At this point, my husband came in and looked confused and worried. I explained that he was so hungry that he was hysterical, but he wouldn't eat. David asked if he should make a chicken nugget. I said he was welcome to try. So he did. In the mean time I got Robbie up and put him in his high chair. Robbie get quiet for the first time in about 40 minutes. I cut up the warmed nugget and offered him a piece.

He ate. I handed him one piece at a time for a while until David took over and I was able to resume cooking our dinner. All in all, he ate half of a small chicken nugget and a few crumbs of cheese. But it was enough to make him feel better. The rest of the weekend, he ate fairly well by Robbie standards.

I don't know if he learned anything on Friday. I relearned that sometimes I'm not as strong or patient as I should be as a mother. It's not a lesson I wanted to relearn, but it's the brutal truth of living with a child who will not eat. Sometimes it's harder than others. Sometimes you're so frustrated and angry that you honestly give up. Maybe it's giving up for 40 minutes of a meltdown, maybe it's giving up for a week or a month or a year and just relying on the tube. Sometimes it's easier not to feed them because the fighting is just so hard.

And then I started thinking about that woman again. I thought about how hard it was on Friday to not feed my kid. He's screaming and crying and starving and everything in my being said to just put it in the tube. He's hungry, feed him.

You know those boys had to scream and cry. On Friday I could hear Robbie's stomach growling and I swear, it made my soul growl, too. This woman had to see and hear those boys starving and yet she locked the refrigerator to keep them out of it. That's some kind of twisted dedication there. I'm here to tell you, starving your child is harder than it looks.

I don't have any witty wrap up, or clever closing. It was just one of those moments in life where I found myself standing still and marveling at the twisted nature of humans. When I was infertile, I marveled at the ease with which crackheads & meth addicts seemed to conceive and birth children while I could point out dozens of emotionally & financially stable families who'd love to take in one of those babies or make one of their own. This weekend, the meth-head mother was this lowlife who spent such effort starving her child out of spite while I implored mine to eat.

Some days it just taxes my soul. Of course, there are better days, and I cling to them. There are days where he eats 9 crackers in 40 minutes, or days when he acquiesces to eating chocolate for the first time. Or days that he gets so excited about drinking some water that he soaks himself, me and our bed, and is so pleased with his cup that he won't give it up for a refill so we just give him another. Those are the days that make deposits into my soul bank. Thank God for those days.

And of course, thank God for TV, too. Sometimes it's the stories of atrocities done to helpless New Jersey boys that make me count my blessings and realize maybe I'm not doing so bad after all. And sometimes it's a comedian who lets me know I'm not alone.


I couldn't find anything about Louis C.K. having a failure to thrive kid, but he sure has the parenting woes nailed.  (language not safe for work.)




--Trish

We're alive

I swear, we're alive.

Before I got married I worked midnights for a few years. And really, for at least the last 10 years, I've worked primarily second shift and loved it. I like it. I'm a night owl. I hate mornings. Evenings at work are quieter, less drama filled. Doesn't matter what the job is, it just feels better to me.

My husband is a day shift guy, but still a night owl. Even Robbie seems to have come by it naturally. He was one of those infants who regularly woke at 1am and was up until at least dawn. It took close to a year to adjust him to going to bed before midnight. When we got him to go to bed at 9 and sleep until 8, it was perfect.

When I found out that I was going back to 2nd shift, I was upset. Not at the sleep change- honestly, I sleep more now. Instead of needing to be up an hour before Robbie to get ready for work, I can sleep until he gets up.

But man, I must have gotten old because I'm having the hardest time adjusting. I swear I lost a week somewhere. And don't even think of asking me what day it is.

Finally this Monday I felt like I could feel a routine forming. Robbie started to sleep a little better (he had a really hard time, too) He'd get up around 8:30, we'd snuggle until he could eat. Breakfast. More playtime, a little snuggle. Then I'd take a shower while he watched cartoons. While I got ready, we'd talk. Well, mostly I'd talk.. but, he listens well. Pack my lunch and drop him at daycare, then rush to work. When I got home, I'd sneak in to kiss him and watch him sleep a bit. Then we'd do it again.

Monday afternoon a coworker asked if I'd trade the rest of her day shifts for the week. I jumped at the chance to have dinner with my family. I was back to my old day shift. Man, did it throw me for a loop again. Up earlier, remembering to pack a lunch the night before, morning traffic. Not to mention we all have a cold, so I'm not sleeping great anyway. I'm tired!

So lots of things have gone neglected. One of which has been my blog. I'm sorry!

I've really appreciated the emails & messages wondering where I was. It's nice to be missed. I'll be back to my new normal shift starting next week. Hopefully I'll adjust and be back to fully functional soon.

In the mean time, I have to say that good things are happening at home with Robbie. He's eating more and more table food. Tonight he actually ate an entire chicken nugget and asked for more. Towards the end I think he was full but didn't want to stop eating so kept wanting more, essentially licking it, then wanting more.

And in a really amazing happening, on Monday, Robbie came in from playing at daycare, picked up another kid's sippy cup and drank! They gave him his cup and he just kept drinking. He wouldn't give up the cup when David came to get him or when they got home. He wouldn't even let David refill it, so he just made him a 2nd cup and gave it to him. He then drank from that one without ever giving up the first. When I got home, I found him soaking wet, banging two sippy cups together and intermittently sipping.

I have no idea how much he drank. Probably a couple of ounces. We didn't do anything to encourage or discourage. Just let him do what he wanted to do. We all had a good time. Yesterday he didn't have much interest, but tonight he took a few sips of yogurt juice with his chicken nugget at dinner. It's definitely progress.

I'd love for him to start drinking even small amounts and love even more for him to start eating something resembling a normal amount of food. I'm currently seeking a new daycare for him for when he ages out of his current daycare (in September. They're keeping him until 2 adjusted.) but having a LOT of trouble. I've made at least 20 calls with no success. I only got one call back and that was from a daycare that seemed fairly hesitant to deal with both our odd schedule and his feeding issues. She said she'd talk to the teacher and call me back, but I'm not holding my breath.

Being able to leave out the part where he still has to be spoon-fed and talked into it would make my calls a bit easier.

In summary:
Lots of good things
Lots of changes.
I'm sorry!
I'm tired.


Trish

Words

Mother.
Mom.
Momma.
Mommy.


Small words, no more than 6 letters spread over 2 syllables. But the concept is huge. As I've mentioned, my mother- by that I mean the woman who gave birth to me- left when I was 2. I had a mother figure in my paternal grandmother. My dad and I lived with her and my step-grandfather for a couple of years after the divorce. Later, I had a stepmother for a few years. Even though I did call her mom for a while, I never really had one.

Sometimes family members would slip and refer to my grandmother as my mom. I always corrected them that she was my grandmother. Frankly, being confused with the woman who gave birth to me is an insult, but even separate from that, it simply wasn't to be. I didn't have a mother and no amount of pretending would change that.

The word has more power in my life that I even recognized for a long time. I'm a member of a number of a number of message boards, many of which are parenting based. That means a lot of user names in the vein of "MommyToTwelve" or "BufordsMom". I never, ever shorten those names to "mom." They might get to referred to as "Buford's" or "Twelve" but never do I use the word mom except when I actually mean mother. I would be a better Christian if I only used the Lord's name in vain as often as I do the name "mom."

When we began our quest to have a baby, I daydreamed about the day that our child would call me momma. I thought about being greeted with a cheerful "MOMMA!" and even about the the plaintiff wail of "maaaaaaaaaammaaa" after a skinned knee or bumped head. There was a night in the PICU where I could hear a child crying for his mom. My heart broke that, while his mother was there, she couldn't fix whatever had landed him in the PICU. But still, I thought about the day that Robbie would call me mommy.

When he started babbling, one of the first consonants he said was m. I knew it didn't mean anything, but hearing it still filled me with joy. And then he learned how to make the d sound. Since then, everything has a d. Kitty is "Diddy." Thank you is "Dah ooh." Recently he started really saying dada. Then he started greeting David "hi dadda!" It's as sweet as it could ever be, but I also was a little jealous.

David's been great about it, of course. He encourages him to say mama repeatedly. He asks Robbie where mommy is and Robbie dutifully toddles over and pats my leg proudly. Robbie escorted me to the chiropractor earlier this week and the doctor asked Robbie where I was and Robbie came over and poked me in the neck. He knows I'm his mommy, he just can't say it yet.

It strikes me as a little funny now. I avoid the word like the plague for most of my life, focusing so much on the meaning. And here is Robbie, clearly understanding the meaning, but still we don't have the word. It's a little Karmic, I must say.

Over the weekend, I was pretty sure he was starting to call me dadda, too. Then I decided it was just babble. I was just looking for more meaning in random sounds. I shook it off and reminded myself that he'd say it when he was ready.

The last two nights, Robbie's been in bed before I got home from work (This shift sucks.) Last night when I got home, though, I could hear him babbling softly to himself, still awake like the naughty imp that he is. I snuck in and gave him a kiss, retucked him and wished him sweet dreams. Tonight, however, when I got home, he was very quiet. David said he thought Robbie was asleep, so I crept stealthily towards his room and gently pushed the door open. Immediately I saw a little arm moving far too animatedly for a sleeping boy.

I said aloud "Nope. He's up." and flipped on the dim lamp in his room.

The moment Robbie heard my voice, he sat straight up and beamed. He clamored to stand and reach for me. With his voice full of cheer & surprise, he shouted "HI DADDA!"

What could I do but laugh? Maybe mommy isn't such a great word after all.


--Trish (Dadda #2.)

Optimism

I'm just kind of in one of those points in life where you find yourself thinking "what next..." but not wanting to ask because you really don't want to know. In the grand scheme of things, there is nothing terrible going on. I'm very blessed and I know that.

That being said, Robbie's aging out of his daycare in September. Trying to find a new one that 1) I trust 2) I can afford 3) can handle all of his feeding & therapy issues.. well.. that's a challenge.

I just found out that my hours at work are changing. (They're actually changing the hours of our office.) so I"m now going to be working 1:30-10 instead of 9:30-6. That's quite a change and obviously affects home life quite a lot.

Because of the work changes, I'm actively looking for a new job. Not being able to put Robbie to bed at night makes me cry. A lot. Not seeing my husband... like... EVER? Yeah. That's not good for any of us. Of course, this is the crappiest time in history to look for a new job particularly considering I don't really have enough education to move around easily even in a good job market. (I'm kicking my own ass there, yes. I got 3 associates degrees but never a bachelor's.)

This has delayed our plans to try for another baby. Yes, we've decided to look infertility & preeclampsia in the eye and stomp on their feet. Which was supposed to be starting basically NOW. Not that we've prevented at all since Robbie was born, but you know..with pills & dildo-cams & stick-peeing. Maybe not with temping because frankly, I catch my ovulation every month without having to set a 2nd alarm. But actual trying with actual chances at success.

 The reason my hours at work are changing is because we're picking up a bunch of new work. That's all happening while our most-used software system is also transitioning. This is all good in the long run. Progress is good and obviously more work means more job security. But it also means constant training (which, frankly, is lackluster at best.) and spending a good deal of my work day being confused & frustrated.

The bosses are treating the new schedule as though it's a state secret. I think it's just a fun game they like to play. Never mind that we employees could really use more than 1 day to arrange our home-lives. But they will not be reasoned with. (By contract, they must give us our schedules by Thursday at 3pm of the preceding week. I'm told it will be out at 3:00 on Thursday and absolutely no sooner.) This does not improve the morale in the office much. I was lucky to obtain some info on the down-low to know my new hours a day or two earlier.

Basically I spent the largest part of my waking hours being stressed out. I've always coped with that stress by looking forward to the smile on Robbie's face when I get home. He'll still be here, but he'll be sound asleep by then. I'm sadder about that than I can begin to express. But our financial situation doesn't allow me to just up and quit.

Truth be told, I'm not terribly hopeful about finding something that pays even close to my current salary that I'm qualified for. I'm not giving up, but I'm also trying to plan around this new, crappy schedule indefinitely.

I'm trying to focus on the positives. They do exist. I'll get more waking hours with Robbie than I do now. They'll just all be front-loaded. It will be easier to get to appointments. I won't have to take any PTO to go to the doctor or any place with daytime hours. I'll be able to attend a good portion of Robbie's therapy sessions. We will be able to do fun things during the day. Even if Robbie is sick and we need to be home with him, I can probably only burn 1/2 day of vacation because David should be home from work to stay with him before I would need to leave to put in the 2nd half of my hours. There are positives, to be sure.

I know I'm very lucky to have a job at all, let along one that pays well & had good benefits. So I'm trying very hard not to think about missing bedtime 5 nights a week. Or about missing my husband. Or about no family dinners. But it's hard.


I've spent an embarrassing amount of time daydreaming about winning the lottery. My office plays twice a week. The chance does exist. Next to impossible, but hey, I still get my hopes up for a positive pregnancy test each week. I'm nothing if not an optimist. Right?

--Trish

Move forward or fall down

I'm sorry I've been so quiet.

I think blog silence is a vicious cycle. I get busy or overwhelmed and don't post for a few days, then I don't know which thing(s) to post about so I post nothing. Then there's so much that I need to discuss that I'm overwhelmed and tend to shut down the window and say "maybe tomorrow..."

So I'm going to try to catch up.


...
I have received many of your sweet emails asking about Robbie and they've meant a lot to me. They're all still in my inbox waiting for me to know how to answer them.

But I still don't.

How is the tube wean? I don't know. Better, I think. But not great. Since I don't really have any professional guidance for this and Robbie has never been typical even to be a typically atypical kid, so I don't really know how to measure what's good, better, or best.

When we started the wean the last weekend in April, he was consuming an average of about 160 calories by mouth each day. Usually 6-8 oz of purees, and maybe a cracker or two. No more than 4oz at any sitting.

These days, he consumes an average of closer to 300 calories per day. Often more. Usually 12-14 ounces of purees, regularly eating 6 oz at one sitting once a day. He also has been eating very small bites of actual table food. He likes hot dogs. He's probably never eaten more than 1/8 of one on any given night, but he picks them up, he sucks & chews on them. He's moving his jaw like he really means to eat it. He nibbles on french fries and chicken nuggets. He will nibble on most bread. He now can eat more like 5 crackers in a day.

In the scheme of things, I think that's great progress. Is it the 1000 calories/day he needs? Obviously not. But he's doubled his caloric intake and more importantly, he's gaining skills. I can SEE a difference. We still get a lot of food thrown in the floor or simply rejected. But sometimes he takes something new and pops it in his mouth and seems to like it. Words can describe how that feels.

He still eats purees better at daycare than at home. At home, I have to turn Handy Manny on about 99% of the time to get him to let me feed him. Not the best habit in the world, but whatever works. But he drinks better at home than daycare.

If I can distract him or catch him in just the right mood, he'll let me give him sips from his sippy cup. He hasn't taken more than an ounce of liquid total at any time, but again- progress. He's gotten hot and sweaty while playing outside a few times and shown interest in drinking. If he's thirsty enough, he'll even hand me the cup and ask for me to give him a drink. We've explored more flavors (different fruit & vegetable juices) but so far nothing seems to irritate him less than water, so I've mostly been just going with water. Anything that helps him trust a little more.

We still do not tube him at all during the day. I did have a weak moment about 2 weeks in. He'd had about 40 calories all day and was cranky as all get out, but wouldn't be fed. He was clearly hungry, but he still doesn't seem to understand food as the solution. He still doesn't really enjoy being fed so much as he is sometimes willing to submit to my desires to feed him. But this day he wouldn't even do that. I finally gave up and tubed him about 4 oz of purees. It did improve his temperament immensely, but I spent the next 3 days feelings guilty. As though wanting my son to thrive makes me weak. Logically, it was the right thing to do, but it felt like quitting.

Fortunately, since then, we have not used the tube during the day at all. He gets 20 oz of whole milk mixed with 2 packets of Carnation Instant Breakfast at a rate of 75ml/hour overnight. Yes, for the first time since we found a formula he could digest, he's not getting any. Our grocery bill just lowered by about 25 dollars per week.

He seems to do fine with that. He still wets all day (I'm sure the purees are what is helping with that) and seems to feel okay. He's vomiting has almost disappeared. We're down to maybe 1 or 2 pukes per week. And to be honest, I lowered his reflux meds a little (down to an adult dose- still huge for a kid of his size) thinking maybe we could wean him off, but that doesn't seem to be working out. I added that 2nd dose back this morning. It's not so much the vomiting, but I have been seeing more and more refluxy burps and signs of discomfort. If he's not ready, so be it.

The biggest news is that he's regained all the weight he lost. He was down 1.5 pounds at one point. That was very hard for me to take. I could see every rib. His pelvic bones were sharp through his skin. I've seen my kid starving before. I really do not wish to ever see it again. But since we've found a good balance with the milk & powder at night, he's regained that weight. And he may have even gained a little more. It's hard to say for sure since I usually weigh him at night and by then he's leaning towards slight dehydration. Those ounces of fluid can make a big difference in his weight. But he was 23 pounds 12 ounces at his last weigh in. Still bringing up the bottom of the growth chart, but he looks good and I'm going more by that than the number.

So overall, I feel like we're progressing. But of course, from the outside looking in- he still gets 60% of his nutrition through a hole in his belly. He still doesn't drink even small amounts reliably. He's not a typical kid. Less than an hour ago, my boss gave me the "oh, my doctor said if he's hungry, he'll eat" while comparing her 11 year old son to mine. Yet again, I explained that isn't true for every child. It isn't true for my child.

Today, I'm okay with that. I see the progress being made and feel confident that we'll get there someday. But some days I feel hopeless. When we have a day when he just won't eat anything at all? I'm terrified & desperate. I was warned that this process is harder on the parent than the child. I absolutely believe that. Robbie seems happier than ever. He's puking less and he has more control over what he does or doesn't eat. he's still being nourished so his energy levels are still decent.

As his parents, though, we still feel like every meal is like turning cartwheels on a tightrope. You never know which was is up, the line is very thin, and the fall is very steep. All we know is we don't dare stop. Our only choices are to move forward or fall down.


...

In other news, Robbie turned 2 on Monday. We did have a party and there are pictures. But that will be a post for another day. As are updates on his latest skills & habits. You can always catch glimpses at him on his blog.


--Trish